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Why Sleep Apnea Patients Rely on a CPAP Machine Hacker (vice.com)
371 points by runesoerensen 62 days ago | hide | past | web | favorite | 250 comments



I was using a CPAP machine that I couldn't see the data nor extract it to use with SleppyHead. It was awful because the appointments with the doctor were 6 months apart and they were basically about a lot of leak detected by the machine and let's try to adjust it and see in 6 months if it was fixed.

Awful.

Almost 3 years later I requested another sleep study because I was done with no progress. The study found out that what I really needed was a BiPAP machine and a MUCH higher pressure.

Now the insurance replaced my old machine by a Philips-Respironics DreamStation Auto BiPAP, which comes with an app (DreamMapper) that you can sync every morning using bluetooth and it shows the usage time, % of mask leak detected, and detailed AHI information like: Total clear airway apneas, total obstructive apneas and total hypopneas.

This is really all I needed to monitor it myself and adjust whatever I need without having to wait 6 freaking months.

I have a friend that didn't want to go through the study and ended up ordering the same machine as I have. He's been adjusting his settings based on the app. He's very happy with the results and probably would have similar results if he had done the sleep study.


How do people obtain regulated medical devices like CPAP without a prescription? I assume a sleep study is required to get a prescription from a doctor.


I think there's a loophole in that you can buy CPAP machines without a prescription from second-hand sellers. Last I checked it looked pretty inexpensive, too. So, really, you don't need a prescription to try one if you really wanted to.

There's probably some safety concerns, but I've become cynical about a lot of it. Doctors of course want everyone to go to the doctor first, but is it really that dangerous to use a CPAP machine if you didn't need one?


>There's probably some safety concerns

Apparently dry nose and skin irritation. I wouldn't worry too much about it. But if you can get a doctor's appointment you might get an insurance to pay for your experiment.

https://shop.edensleep.co.nz/how-does-cpap-work/#


You can buy used ones from someone who has bought it with a prescription.

It can be preferable to going through the "proper channels", since it can take many months to get the machine through the US medical system, and you need to get some goddamn SLEEP.


You literally can buy them on eBay.


Have you tried? I had a tough time buying a used CPAP on eBay. I had a saved search on file for over a year before I was successful. Every listing that came up, eBay would quash because of the prescription requirement. I finally got one that was a buy-it-now where the seller and I managed to consummate the deal within a few minutes of the listing going online, before the eBay secret police could remove it.


My friend bought his on Amazon.

Edit: removed link.


Your link contains an Amazon affiliate id.

Here the unadulterated URL: https://www.amazon.com/dp/B07K9H22M4


“unadulterated”. I used the tools from Amazon itself to get the shortlink. I didn’t “adulterate” the URL.


yeah, I was wondering whether this article applied to only the older manual adjusted CPAP machines vs. AutoPAP machines.


Messing with your own PAP settings can be a bad idea. I have complex apnea - a little bit of obstructive apnea (small pie hole), a little bit of central apnea (brain messages to breathe don't get through). I had an Auto BiPAP machine, which is like an intelligent ventilator that varies settings to determine the best one. A sleep study plus home monitoring indicated that the machine made my apnea worse!

After another sleep study where they tried many different settings, it was found that static CPAP, the simplest form of PAP therapy, was most effective in addressing my apnea. This was highly unexpected.

My point is that only a sleep technician or a sleep medicine doctor could have figured the right settings out. Beware of fucking with your own settings! I did it multiple times and it hurt my sleep instead of improving it. Pulse oximetry is not good enough to tune your own settings.


Sure, messing with any medical device could be fatal - but so can the medical condition itself. I would like to live in a world where I can make those decisions on my own and improve my life by taking calculated risks, as opposed to a world where my death is an acceptable trade-off for an overloaded and risk averse medical establishment.

That being said, the regulations around medical devices and healthcare have evolved in a certain cultural environment where blame is the name of the game: if any treatment ever fails, the public and political uproar against the healthcare industry is always vicious and patients will never accept any personal responsibility. It's understandable why the medical professionals react by removing any kind of control away from the patient - you cannot assume responsibility for something that you do not control.

That lone idiot that pushes his treatment to eleven to see if it has any effect on his erection ruins it for the rest of us. And I guarantee you that for any user accessible feature on a medical device, there will be such an idiot, and that he or his family will sue. And that's the case against which medical manufacturers optimize against, in this instance, by abusing unrelated copyright regulations and denying life saving options to other patients.


>Sure, messing with any medical device could be fatal - but so can the medical condition itself. I would like to live in a world where I can make those decisions on my own and improve my life by taking calculated risks, as opposed to a world where my death is an acceptable trade-off for an overloaded and risk averse medical establishment.

>That being said, the regulations around medical devices and healthcare have evolved in a certain cultural environment where blame is the name of the game: if any treatment ever fails, the public and political uproar against the healthcare industry is always vicious and patients will never accept any personal responsibility. It's understandable why the medical professionals react by removing any kind of control away from the patient - you cannot assume responsibility for something that you do not control.

I completely agree. I think there should just be laws governing this though. It needs to be an adult making the decision that is sufficiently smart to understand the risks. And then you sign something that absolves others if you take that personal risk and can't sue if it harms you.


Counter-anecdote:

My particular doctor shoots for an AHI around 10, which is still mild sleep apnea (5 is the threshold) and is still high enough to get you diagnosed and provided a CPAP in the first place.

So for 6 months my AHI hovered around 8 or 9, occasionally spiking to 12 (which made me really feel like crap).

My technician won't adjust without doctor's orders (and incidentally also told me I'd fry the entire machine in days if I used non-distilled water in the humidifier, which is just absurd.) The doctor books appointments months out, and is OK with my current results anyway.

So I tried bumping my pressure up by 1 and lowering the exhale comfort feature on my own. Tada! After a month my AHI averages 4, sometimes spiking to 6, and I feel much, much better.


CPAP with humidifier user here. About nondistilled water:

My humidifier has a heated metal plate in the bottom of the tank. Its temperature is set on a humidifier scale of 1-8, plate temperature increases from 1-8.

Evaporation of nondistilled water will leave mineral deposits behind. Deposits decrease thermal conductance between heated plate and water. This will reduce evaporation rate, reducing effective humidity for a given setting.

If the control loop is smarter than usual and includes humidity sensing, there's a potential for thermal runaway. Doubt this is an issue, it's probably a simple temperature loop. I don't think you'd "fry the entire machine in days".

There may be more bacterial growth potential with nondistilled water. Don't know.

Using distilled water is a little less convenient, but could avoid some issues.


It's really not a big deal to use tap water, I did for years until I lost enough weight that my sleep apnea went away.

1.) Fill the tank with regular cheap vinegar to get rid of the mineral deposits. Maybe there is a problem with some tanks, but mine were all plastic or stainless steel and vinegar didn't seem to have any affect on them.

2.) Usually the tanks hold enough water for two nights, maybe a little more, at the settings I used them at. Dumping out the water in the morning kept the mineral content from becoming concentrated due to evaporation, and kept the buildup down to more manageable levels. If I didn't dump the tank every morining then I have rapid mineral buildup. I know it sounds silly, but it took me an embarasing amout of time to figure this out.

Once I worked out those two things I had no trouble with using regular tap water in the humidifier.


> Evaporation of nondistilled water will leave mineral deposits behind

This is true, but it will take weeks or months, depending on your water quality, and is easily cleaned if you know how.


Days in seattle


OK. I realize tap water composition vary.

I normally use distilled water, but if I'm traveling and don't have it handy, I'm not losing sleep over using tap water 1-2 nights.


Wow, that's insane.

My AHI during my sleep study was approx. 55-60 (It's been several years, forget the exact number).

With my machine my number is usually 1, most nights under 0.5.

(FWIW: Like you I found increasing the pressure a little and turning off all the 'comfort' features was the winning formula).


> My point is that only a sleep technician or a sleep medicine doctor could have figured the right settings out.

Why? What about the process of adjusting the treatment and monitoring the results wouldn't have been possible to do at home?

I don't mean to discount the advice of experts. Certainly, an expert willing to dedicate sufficient time and attention to getting the treatment right for a particular patient is more likely to get optimal results than a patient modifying their own treatment. The problem the article focuses on, however is patients being unable to get sufficient time with experts.


Central apnea is the scary story people tell on the forums about why not to just get an APAP and skip the sleep study.

(I'm sort of suspicious that I have some kind of apnea since my wife says she thinks I do, but there is just no way I'm doing a sleep study, so this is a topic of some minor fascination for me).


> but there is just no way I'm doing a sleep study

Dude. If you even have the suspicion of having sleep apnea, please get yourself tested. I do not care what your reasons are. There is no way your reasons are more important than the increased risk of stroke and heart attack, among other chronic conditions. If you do have sleep apnea, your brain (and in fact, the whole body) is getting chronically deprived of oxygen, with all the ill effects this causes.

Do the sleep study. Nowadays you can do it at home with a small device, in the comfort of your own bed. No medication is involved.

If you do not find indications of sleep apnea, congratulations. But this is not something you can usually figure out on your own, unless it is very severe. The cognitive decline is gradual, any chronic effects take a long time to get noticed.

When you start using a *PAP machine, only then you figure out, as the brain fog is suddenly lifted and you realize how much you have been handicapped.


When you start using a PAP machine, only then you figure out, as the brain fog is suddenly lifted and you realize how much you have been handicapped.*

See, again, I am sold on the "you will be an atomic superman" argument! Give me the damn machine! :)


On the cpap subreddit, they frequently mention the 'superman phase'. As with most things, you'll adapt and that will become your new 'normal'. But for a time the contrast is striking.


there is just no way I'm doing a sleep study

As others have already explained, you can now do an in-home study. Not nearly as good as when you're all wired up in the sleep center. But still good enough to get a general indication of how you are doing.

Okay, you still resist that, so ...

How about going to bed, for one night, with a small, inexpensive, device on your finger? Viz. a pulse oximeter. Surely you can handle that for one night???!!!

When you stop breathing, which you admit you do (at least according to your wife), the amount of oxygen in your blood drops. Perhaps to unsafe levels. This is very bad for you long term. Very bad.

So, just try the pulse oximeter. For a few nights. It's cheap and non-intrusive.

In anticipation of scaring yourself into getting a CPAP machine, buy an oximeter that's compatible with SleepyHead. Here's a disussion about that: http://www.apneaboard.com/forums/Thread-What-oximeter-works-...


Could I take results from a pulse ox to a random urgent care clinic doctor and get an RX for an APAP? I would totally do that. I'm actually totally fine with paying out of pocket.

(I'm not really that resistant to doing an in-home sleep study, for what it's worth.)


No.

For the sleep study, you need a chest band, a nasal cannula, and a pulse ox.

They need to know how much/how deeply you are breathing, and correlate that with your oximetry. The main thing they are looking for is central apnea, where your body stops trying to breathe. PAP doesn’t fix central apnea, because it’s not obstructive, and in fact it can CAUSE it, especially in people who have had obstructive apnea or pulmonary disease for a long time.

You almost certainly need to see a sleep doctor to get a prescription.


Could I take results from a pulse ox to a random urgent care clinic doctor and get an RX for an APAP?

That I don't know. My guess is, probably not.

I do know that, when I had my in-clinic sleep study, the technician showed me how my blood oxygen levels were rising and falling. Rhythmically, corresponding to every breath I took.

If you see the oxygen desaturation for yourself, maybe that's what will convince you to at least do an in-home study.

I will never do another in-clinic study again. I fucking hated it, tons of straps and wires all over. I had a lot of trouble getting to sleep and staying asleep. So, as Bill Clinton might say: "I feel your pain". And they did give me a sleeping pill in the middle of the night to calm me down (another issue of yours). But that was over 10 years ago, I don't think that in-home studies were popular at that time.


Curious why you won't do a sleep study? I recently went through this whole process, and it was pretty fascinating to see the data they collected from all the sensors (also confirming that I have mild OSA).


I have a _very_ delicately balanced sleep routine and a sort of mortal terror both of insomnia and of hypnotic drugs.

If it were safe and easy I'd probably just buy the APAP and see if it made me feel better. I don't feel much urgency; I get about 6 hours a night on the regular and don't as a rule feel tired or cloudy during the day (but it's possible that with an APAP I would, relative to my current condition, feel like an atomic superman, which is what drives my fascination.)


Also echoing mabbo, I did a sleep study in the comfort of my own home about a year ago. I'm told it's not as precise as a "proper" sleep study in a lab since the instrumentation isn't as precise, but it was basically just a band that I strapped to my head before bedtime. No drugs, no technicians. Just some accelerometers and a microphone to hear what your snoring sounds like. And that was enough for my doctor to diagnose me with mild sleep apnea and give me an oral appliance. Basically it just forces my jaw forward while I'm sleeping, which keeps my airway open. Never tried CPAP but I'm told that the oral appliance is much less intrusive.


I did my sleep study when I was 24. There were no drugs involved. It's just a bunch of sensors taped to you while you sleep with a camera watching you.

Bit odd of an experience, but nothing that should concern you much.


My understanding is that if you're not going to fall asleep in the setting of the sleep study, they'll Ambien you out.


Echoing others' encouragement. My study was an easy at-home test which confirmed how bad my hypopnia was, mostly from the blood/oxygen ratio. Mine was going down into the 70s. It was so bad that immediately after that, they scheduled an inpatient test with the PAP machine.

I was super skeptical of being able to sleep a) in a strange bed, b) with all those sensors on my head/chest, c) 4 hours earlier than usual, and d) on my back/side. (I was a hardcore stomach sleeper before.)

At the second study, they strapped me into the sensor harness, put on the mask, and turned out the lights. It took what felt like about 5 minutes to get used to the sensation, but then I was out. Like someone flipped a switch to "Sleep now." Eight hours went by like a flash.

I woke up the next morning super refreshed and feeling amazing. When they said it would be three days until I could get my machine, I was kind of sad.

Eight years later, I've still got the same machine, and it's still like hitting an off switch when I put it on. I only average about 4.5 hours' sleep during the week, but it's turbocharged. My AHI seldom crosses 2.0 and I can see exactly what I'm doing via SleepyHead.

Best decision I've made health-wise, except maybe kicking sugared soda.

Edit: it also let me drop my hypertension prescription to the minimum dose.


You're ultimately in control of the situation. If you explicitly tell them that under no circumstances do you want to take a drug to induce sleep, they're not going to force you to. You could just call it off if you can't sleep.

I've taken a sleep study before; they're not that weird, just a pile of sensors and a bed. And I also know from multiple people that if you do have any form of apnea, addressing it can have a life-changing impact.


Nowadays I believe an at-home "study" is more common, cheap, easy, and non-disruptive.

They give you a little case of sensors to take home & show you how you should attach them before bed. Chiefly it's a finger pulse oximeter & something worn on the chest to measure sleep orientation, chest motion, and record snoring sounds. You sleep as normal, at home, and return the devices the next day for its readings to be interpreted.

So: your concern about being in an unfamiliar setting, or being offered drugs to sleep, may be outdated. OTOH, if you're not in general risk groups nor experiencing daytime tiredness, there may not be not much reason to dig further (unless your wife has noticed something else worrisome).


That does not match my experience (but n=1 and all).

In my case, the result of the sleep study where I didn't really sleep was, "hmm ... it looks like you might have insomnia." (No kidding). No drugs were offered -- or forced -- during the study.


Have gone through 3 sleep studies. No drugs were offered and I never got to sleep. You would be fully within your rights to decline any such offer and they wouldn’t give a shit anyway.

Given your sleep routine I promise the study would be pure hell. They are for me. But I need that APAP.


See! You get it! If I felt I had an urgent problem I'd just deal with the study, but "feeling tired during the day" is very, very low on my list of complaints. I sort of feel like I get away with murder, biologically; I go to sleep at 1AM and get up at 7AM and do just fine.

On the other hand, my wife tells me I snore and randomly stop breathing, so I have reason to believe there's something going on.


> On the other hand, my wife tells me I snore and randomly stop breathing

Snoring is "fine". There is some resistance, but it's likely you can still breathe sufficiently. The problem is when snoring stops.

By the way, my first sleep study was crap and I couldn't sleep and no conclusions were drawn.

The second was at home and I had a cpap machine waiting for me one day after I returned the results.

> If I felt I had an urgent problem I'd just deal with the study

By the time it's urgent you are already deep into other issues, such as high blood pressure. And now you have more than one issue to deal with. This is like the biological version of tech debt.


One problem with waiting is that as apnea worsens it can cause depression and sap your will. That's what happened to me. I knew I needed to get treatment, but that became totally disconnected from my will to start the process. My wife was the one who ended up calling the doctor to set things up.

Better to start the process early and as a side bonus not sacrifice so many brain cells to hypoxia.


Have you thought about an at-home sleep study? My wife and I both did that to get our CPAPs prescribed. Just had to wear a band around the chest (with a little unit that read the force of expansion, I presume), a pulse-ox sensor (IIRC), and something else I can't recall. I'm sure it's not perfect, but my doctor recommended it and was happy enough with it.


I'm the greater insomniac in my household, so I was the one to note my wife's snoring and breathing cessations. She felt fine in the morning. A sleep study showed her PO2 levels dipping as low as 76. She's a CPAP user now.

I think of sleep apnea as a bit like chronic high blood pressure: few or no perceptible symptoms until you become a dialysis or stroke patient.


It's a PITA, that's for sure. There were no drugs in mine. But I reasoned that it's only 1 night. I chose a time where I didn't have work the next day. No big deal, it's not like you have to do it for a month straight. Do you not get any time off work at your job?


> my wife tells me I snore and randomly stop breathing

This is bad for her and worse for you. You have an apnea for sure. You’re losing brain cells unnecessarily. Luckily I know your posting history and you can obviously afford them. I can’t! But for your wife’s sake get a home sleep study.


I probably will sometime in 2019 (for totally unrelated reasons having to do with insomniaphobia, I have a pretty odd sleeping arrangement that involves me sleeping mostly upright these days which I'm told has mitigated this problem).

I'm just saying: if I could just buy the damned APAP and try it out, I would do that first. Friends who've gotten sleep studies have uniformly described it as simply a hurdle to getting the actual RX for the machine, and that all the learning and diagnostics happened after they started with the machine.


You can just buy the damned APAP. The gear I use can be had off Amazon for about $700. A Respironics Dreamstation, and a Resmed Swift FX nasal pillow with headgear and quick connect hose. Probably cheaper if insurance covers it, but you don't actually need it.

If you think you can breathe through your nose with your mouth closed, the nasal pillows are nicer. If not, get a mask. They're nice to have anyways, if colds clog your nose.


Weirdly, the nasal pillows don't work for me — my AHI is higher when I use them instead of my nose mask.

Fortunately, the masks/pillows aren't super expensive, so folks can experiment.


You can buy used CPAP/APAP machines from Craigslist or wherever used things are sold. Or so I'm told.

You should do it so your wife can sleep at night instead of hearing your snoring, even if you don't care about being healthy yourself. Sheesh...

There are many, many stubborn guys who refuse to try CPAP machines for years and years, and regret their lost years enormously afterwords. When you get to your sleep doctor, he can tell you what an archetype you are.


> involves me sleeping mostly upright these days

Wait, what? How does that even work? That sounds fascinating.

Also, are you Minbari?


Buy a machine from ebay


My insurance requires 3 at-home failures (as in bad data, etc) before they will even approve an in-lab. I'm sure you can request one if they don't; it's cheaper for them.


They don’t really need all that much data. An hour or so of solid sleep will give them what they need.

The full Monty study is pretty bad, with ECG wires all over your body and EEG electrodes all over your scalp. Nobody gets much sleep, but again, they only need a little data, and most people manage to fall asleep eventually,


This might be a function of the particular lab. Yours is the first suggestion I've heard of that possibility.

I've had two overnight lab sleep studies. During the first I registered less than 5 minutes of sleep. Nobody suggested giving me any drugs.


This does not reflect my experience. Besides, taking Ambien would show different brain waves than actual sleeps so it would make it less useful as well.


just fyi the current at home test is basically a wristwatch with a light finger oxygen sensor, https://www.itamar-medical.com/watchpat-home-sleep-testing-m....

It seems that the APAPs should be able to be bought without a prescription, and besides inertia I'm not sure why it is.


Dang.. my sleep center is way behind. Had a take-home sleep study last week and I had to have the chest strap and finger sensor. Pain in the butt, but worth the data it captured. Going on APAP after trying for 6 years to work with an oral appliance after not being able to tolerate CPAP.


Given that you get 6 hours of sleep and are not tired/foggy during the day I'd say it's unlikely you have sleep apnea.


Theres some level of being always tired and just being attuned to it. Not putting that diagnosis on parent, but I'd put myself in that bucket, and I'd wager its easy for old hackers like me who spent a lot of nights exploring/working/studying to the point of exhaustion during their teens and twenties.


I had this discussion on HN almost 10 years ago (wow, I'm old) and 'iamelgringo --- a (former?) ER nurse --- shut me down pretty hard.

https://news.ycombinator.com/item?id=2030433


iamelgringo’s comment was pretty convincing. Thanks for referencing it.


echo'ing mabbo... there were no drugs involved in my study either.


Thanks for sharing your experience. I don't think enough people understand the complexities of apnea. That said, I'm curious why you don't think pulse oximetry is enough? Isn't the ultimate goal to ensure proper oxygenation(and CO2 removal but I would think that would be correlated)?


> After another sleep study where they tried many different settings,

Sounds like messing with the settings helped you. Of that you'd discourage other people from trying it.


Professionals tried different settings, that's the key difference.


Having done home dialysis id be very wary of changing the firmware settings on a CPD machine let alone a HD one - but that is a lot more invasive.


Very interesting. Happy you improved your treatment. Very interesting.


Accessing the clinician menu on most machines is accomplished by a quick Google search. I've adjusted my pressure several times to bring down AHI, or to reduce some side-effects of higher pressures as my weight comes down. Most machines report AHI in the main menu. My point is this... the article's premise is on target, but the situation isn't as dire as characterized.


The hack they are talking about is not to change the settings on the machine, but to let patients look at the data the machine collects in order to understand their condition better. Separately, there is a web forum community that discusses how to change machine settings based on those insights, but you don't need to use SleepyHead to change the settings.

> Most modern CPAP machines create reams of data while they’re being used. They track things like average air pressure, AHI, average use per night, mask leak rates, “flow limitation index,” and other statistics about what the machine is doing and the patient’s sleep quality. Generally, the data is stored on an SD card, which a patient takes to their doctor once every six months (some new devices also transmit data wirelessly to an app; the data available on apps, patients told me, is rarely as thorough as what the machine is actually collecting.)


Same here. As I have lost significant amount of weight over the past 18 months, the higher pressure actually became an impediment to restful sleep. A quick google search and a couple nights of trial-and-error and I was good to go.

Which reminds me... it's time to lower it, again.


I switched my machine from constant pressure to automatic, it's made a significant difference and my AHI numbers have remained the same. So far, I haven't had to alter the pressure manually.


Which model are you using?


This was my personal experience as well. I use a ResMed machine and I remember when I first got it that the instructions warned that only technicians could make setting adjustments. After a few nights of waking up feeling like I couldn't move air through my nose, I just looked up how to do it. It only consisted of holding down two buttons at the same time. Very straight forward. I haven't tried accessing the internal data, but I've been content enough with the breakdown that they provide each night.


Get a newer machine, an S10. Steal money if you have to. These are much better, not just the menu but the pressure logic.


FWIW, there is no such thing as an S10. The last of the S-series (by name at least) was the S9. The current model you want is the AirSense 10 or AirCurve 10 if you want a BiPAP.

Anyways ... I have an AirSense 10 and I have to say ... I have no idea what the S9 was like, but the current model still fucks up my levels when I wake up in the middle of the night. Not sure how my breathing is different when I'm awake, but it inevitably causes the damn machine to detect an obstruction and it will push the pressure all the way to the maximum.

A pretty common complaint, but they have not released a fix AFAIK.


Odd, but I'm reading your comment next door to ResMed, did not realize they made CPAP machines


Was that the pressure too high for you to exhale or too low to overcome the apnea?


It was just that I'd wake up and feel like I was struggling to move air in. The machine was working as intended as far as I know. It was still registering that air was getting through so it was not adjusting the pressure. I just have allergies and even though I'm on Montelukast, I still have to crank up the pressure just to feel comfortable.

I'm not sure now that you mention it, maybe it should have been increasing the pressure.


CPAP pressure is a prescription. Cpap machines will allow you to adjust the ramping of the pressure. What machine do you use?


Great look into an altruistic device hacking subculture, but the real story is how badly underserved this medical community is by healthcare providers.


There is a fun sci-fi on topic published last year: Autonomous by Annalee Newitz.


I did read an article early this year where an individual died on a camping trip as he was not carrying his CPAP. So, yes, it does vary for each individual but sleep apnea can be deadly.

Also, I cannot recommend enough anyone showing any symptoms of sleep apnea to get it checked out. I started using CPAP just over 2 years ago now and it has been a life changing experience, even though the study suggested only a 'Mild case of Sleep Apnea'. I don't think the years of damage is completely recovered yet, but day to day difference when using the CPAP while sleeping is quite amazing.

Hadn't ever thought I would say 'So that's what it feels like to be fresh and energetic through the day!' but I did. :)


I wasn't aware it was possible to die from apnea - does the body not wake itself up when oxygen drops?


The way I got it explained was that it's the heart that can't handle the stress the lack of repeatedly not getting enough oxygen causes. The damage it has done to my heart before I got diagnosed is also not reversible, the goal is to not let it get worse, stay healthy, etc. I've been a patient for over 8 years, lost a lot of weight, didn't help, so for me it's imperative that I can see my own data and grasp what is going on. As to answer your question, yes and no, you don't really wake up but your deep sleep gets interrupted which causes you never to feel rested, especially if you have a severe case, like more than 30 AHI per hour (like me).


I'm very curious about the answer to this. I would expect the answer to be "yes." The current fad in alternative health groups is to tape your mouth shut while sleeping in order to improve sleep quality. I haven't heard of anyone dying yet even though it sounds pretty scary.


What were your symptoms and what kind of difference do you feel now?


The primary symptoms are snoring and fatigue.


How much fatigue though? I'm often tired but I've gotten used to it and can go through my day.


Ever fallen asleep on the shitter? Or just suddenly out of nowhere an extremely strong urge to sleep?


I fell asleep in the middle of conversations a couple of times...


This could be sleep apnea. Do you snore a lot or have people noticed not breathing for periods during your sleep, causing you to wake up? Ask an SO or something to keep an eye out if you can and tell you if they notice it.


For me, I'd crash straight after work one day a week, I just couldn't last till the evening (I work an office job, so no physical tiredness). Also, I recall driving on a highway was terrible, I'd start nodding off after 10mins.


Does it bother you at all while sleeping?


I'm a picky sleeper and I was dreading the CPAP. Now I love it. Sure, the hose can get in the way, but on the flip side I can breathe while fully under the covers and I never have to smell my farts!


I never even considered this option, a whole new world awaits me


Not once you find the right mask and get used to the constant pressure. It is truly life changing in terms of energy level and your own health. I switched from a full face mask, which leaked air to nasal pillows (resmed P10) and I am happy.


I really struggle with this 5 years in... I open my mouth when I sleep, probably because of adenoids (had them removed twice, keep growing back), so I can't use nose pillows/masks, and the full face mask leaks badly as my bottom jaw is smaller than usual when compared to the top one. I though about chin straps, but my damn head is too big for most of them...


CPAP user here. It's a matter of adjusting to the treatment and setting up the gear correctly. Both can take time. It's worth it.


I just started a about a month ago, and let me share my experiences that I don't see others report often in response to this question.

(The responses are out there, but they are harder to find)

There are many "masks" available - from covering the face to a nose mask to a tube under the nose (like an oxygen, but with a much fatter tube, including running up the sides of the face to the 1-1.5 inch diameter tube that runs to the machine). I'm using that latter, and I've been struggling.

If I'm sitting the mask is comfortable and I can tune it out unless I speak or breath through my mouth (it tries to prevent that with airflow, which is uncomfortable but not painful).

BUT if I'm trying to sleep there is nothing to distract me and I'm very aware of the tubes. It's hard to relax and breathe effortlessly - I feel like I'm breathing very deliberately, which in turn keeps me awake. I sleep on my side, which doesn't work at all - I either squish the side "tubes" (they are flat silicone-ish) which cuts off air, or I hang off the side of the pillow enough to not put that much weight on it, but then the sound of air rushing through the tube alongside my ear is very audible.

I'm training myself to sleep on my back with pillows built into an armchair-like support, but it's slow going changing a lifetime habit. On my back, the only issue is the forced focus on breathing. Oh, and staying on my back of course.

I also still wake up at times with the feeling that I can't breathe, but the air is flowing. I don't think it's mental, because it continues ( I can feel the air blowing from other places, but it's not getting into my lungs until I adjust the nose piece, sometimes it takes several times. Other times I wake up to discover I've removed the mask in my sleep.

So basically, for the past 23 nights, I've been unable to fall asleep until I'm exhausted. My wife might as well be in a different bed - no snuggles as an option. I only get 5-6 hours of sleep before waking (usually due to that feeling of not breathing), at which point I'm rested enough to not be able to fall asleep with it on again.

It DOES make a difference - the english language doesn't have the words, but I end up feeling much more energetic, but still tired (because 5-6 hours of sleep that only starts when I'm exhausted). Many of the praises I was promised (unasked!) haven't manifested (at least not yet): no noticeable change in my hunger, focus, anxiety, depression, general health, or bedroom-focused activities...just more feeling of physical energy. After being tired for most of my adult life, the energy is a nice change, but I'm still tired and was really hoping for the effort to improve some of my issues to be reduced to what seems like normal-person levels.

Digging deeper in my research, I've found many of these symptoms are common and it can take several months to adjust everything. Some users report that it never really gets better, others report that it changed their life and they swear by it up and down.

My follow-up with the doctor is still 3 weeks away, and who knows what he'll say, but getting this far in the process has taken literal months (4 months now) mostly waiting for appointments, with some waiting for test results. The insurance was (and is) a complication (despite being told repeatedly by multiple parties involved that my insurance is very good) and honestly, if you can afford it, I'd recommend looking into the ~$2K for the machine+accessories out of pocket so you can skip some steps and focus on actually getting the machine. I'm sure the months of waiting to even get to use it did not help the let down I've felt in the results to date.


It will take a while for you to adjust. Fortunately, I think I adjusted pretty quickly. Still, I get what you mean by the tubes proving troublesome for sleeping.

I need to have them properly set up so that I am not disturbed by it during the night. Sometimes they can slip off the mattress and dangle from the side of the bed and pull on the mask - a definite recipe for waking up. Being worried about sleeping on the tube and squishing it is also a worry that can break my sleep, as those things are so damn expensive.

Side note from my own experience - Quality of sleep is dramatically improved, but it is still exhausting to have a few consecutive nights of less than 7 hours of sleep.

7+ hours (for me) with CPAP is perfect for a nice, energetic day.


If it makes you feel any better, I've read that most people require 4-5 different masks before they find one that works well for them. Usually there's a 30 day trial period on each mask so if it's leaking or not working for your sleep position, take them up on your free replacement mask.

Not sure how your AHI is but I need to be under 3 (and no leaks) to feel "great". Some people can self titrate to 0, but I'm not one of those lucky ones. Best I've ever hit was 2.0, but it was like night and day from my usual 4-5.

Good luck!


Thanks for posting your experience.

I use a full face mask (Resmed thing). It has one hose connected to the center of the mask. I'm able to sleep on either side (side sleeper by preference). My pillow doesn't interact with the centrally-located hose.


I'm more concerned if it bothers your sleeping partner.


My partner uses a CPAP machine (possibly not a "modern" one... it's 3-4 years old I believe). It's tolerable, but not great.

Cuddling is not really possible once the machine is on. It makes some noise which I've mostly adjusted to, but sometimes it gets significantly louder for a while, waking me up or keeping me awake unless I put earplugs in. Occasionally it blows air on me (not sure if the mask is leaking or what), and I have to rearrange blankets to block it before I can get back to sleep.


Every mask I've ever used automatically vented air by design. (Which yes, is really awful WRT cuddling.)


My SO won’t sleep in the same room as me without my CPAP.


Modern machines are very quiet. My wife says it doesn't bother her at all.


And even if the machine made any noise, my snore is louder. :)


My wife loves mine. Makes me stop snoring. She doesn't like the comfortable masks because they leak more (which makes a rushing noise).

She'll wake me up and make me wear it if I don't.


I wrote the Mac/Linux driver for the Fisher & Paykel Healthcare Icon CPAP device. The principle of operation is very simple: just blowing air into your face while you're sleeping.

The trouble is, it's not pleasant to wake up with air blowing at you. So they have an algorithm to detect when you're sleeping peacefully or about to wake up, based on your breathing pattern. It turns off the pump when you're waking up.

The CPAP plugs in with USB-serial, but the connector is buried deep inside the device so it needs a special adaptor just to reach the pins. The protocol is obfuscated and checksummed, but not encrypted.

I'm looking for a job now, so if anybody would like someone with experience in this area, please reach out.


I have to adjust my own pressure as well, since I can't afford to do another sleep study (American Healthcare rocks!).

The biggest difference in my sleep came from when I purchased a machine that auto adjusts based on what you need, so no one could lock me out from getting the best healthcare possible.


> I can't afford to do another sleep study (American Healthcare rocks!).

That's the invisible hand of the free market taking care of you!


Almost nothing about the American healthcare system has anything to do with a free markets. From medical schools, to opening a new hospital, to pricing, to forced insurance, healthcare tied to employment, companies or government pay for almost all of it, FDA drug approval process, etc. Not saying free market and medical are a good mix (who knows?), but what there is in America not is not even a market at all.


> Not saying free market and medical are a good mix (who knows?), but what there is in America not is not even a market at all.

The free market is simply incompatible with health care. Imagine a world where, any time you have a life-threatening health problem, you can expect to transfer everything you own to the hospital, since they have perfect leverage over you.


That's not how free markets work. Otherwise food would also cost everything you own.


Any kind of food will do to prevent starvation given a slight mix. So, if you won't sell me potato's for a decent price, I'll just get rice from somewhere else.

In medicine, you tend to need very specific treatments. This means the set of potential suppliers is much lower, which essentially means the supply is restricted. If you won't sell me an epi-pen for less than 100 dollars, there aren't a lot of places I can turn to. Moreover it's not like open-heart surgery is going to work.

Besides, some procedures are just actually expensive. Open-heart surgery takes a lot of labor, organ transplants require intense logistics. Dialysis is a complex and repetitive procedure. The 'fair price' for these in the economic sense is still high. Way to high for most people's morality.

Should people really have to chose between death and the bankruptcy of their entire family? Because in a functioning free market, it is near essential that some people have demand for something they can't pay for. So if we turn dialysis, heart surgery, etc. into free markets, there are going to be people who need those treatments that cannot pay for them.


> So if we turn dialysis, heart surgery, etc. into free markets, there are going to be people who need those treatments that cannot pay for them.

Isn't that exactly what happens now?


Poor analogy. Food is not generally patented, and people can eat many different kinds of food to live.

Would you tell the people that needed epipens "well just have some paracetamol instead".


In a free market, there would be cheap generic alternatives. Epinephrine itself isn't expensive at all (around a dollar a dose), and the autoinjector was patented in 1977, making it long-expired (though modifications of the design are covered by newer patents).

There are other examples, such as complex surgeries that would illustrate the point you're trying to make better.


Anyone can grow food thus price floor in normal times (and yes everything you own in times of great famine. Diamonds for tripe in WW2 Polish ghettos). Can’t grow a new lung.


I disagree. If doctors had to compete with each other, then none of them could charge so much.


It's hard to shop around when you're having a heart attack.


You're supposed to do that _before_ you have a heart attack.


Correct me if I'm wrong, but I'm pretty sure the 911 operator doesn't ask your preferred doctor before sending an ambulance.


Congrats. You managed make it like telco market, in that everyone will subcsribe to a group of doctor for a long-term contract.


This is how a HMO works in the US and they are very popular due to lower costs than health insurance plans that allows you to go to any doctor/hospital of your choice. My experience with Kaiser in California is that they also provide better service in general, but sometimes don't have the specialty services you might need in their system.


Not true. Healthcare is pretty much the opposite of a free market. In a true free market, healthcare costs would tank.


Touche.

Perhaps the rhetoric of free-market-can-solve-everything Libertarians, the get-the-government-out-of-my-health-care Republicans, and the healthcare-is-a-human-right Democrats are all co-opted by America's crony capitalism and we get... this.


I spent a total of $150 with my provider, this includes the sleep study and a follow up, $0 for the machine itself(Airsense 10).

If anyone else is in the same boat, please check with your provider first. It may not be that expensive and in some cases there are even discounts – not because they care about you, but because treating the conditions that sleep apnea causes is so much more expensive.


> I can't afford to do another sleep study (American Healthcare rocks!)

I met a sleep study technician who, though convinced he actually has sleep apnea himself, said he could not afford a CPAP. Because he scrapes a living together by working as a temporary contractor for two different local sleep clinics, he does not have health insurance.


I'll do you one better - when my first wife was in nursing school, part of her education involved many hours of unpaid internship. So she was working 2 years for free giving care at a hospital she could not afford to be treated at herself and which did not have to provide her insurance.


I must admit that is one better. What a system we have...


I know I suffer from sleep apnea (poor sleep quality, relatives have noticed me stop breathing for brief periods while asleep, loud snoring) but I literally cannot bring myself to get a sleep study done because I know it's not going to be cheap, and to top it off I don't even know how expensive it's going to be in the first place.

It's not like I can't afford to pay either, I do have some money stashed in my HSA but when I'm trying to get to a point where I have a full years deductible in it to cover a true emergency it's a bit of a gut punch to suddenly take $X00-$1X00 out to wear a device and then have a technician analyze the data from it.

All of this is why my first step right now is to keep losing weight, because I know weighing 230lbs as a 5'10" male isn't helping me at all either.


You don't need to do a full sleep study. Standard procedure these days is to prescribe an at-home sleep apnea test. A sleep health company will send you a little monitoring device by mail. You wear it while sleeping during the night. It measures your pulse, blood oxygen levels, breathing patterns, etc, and transmits your data back to the medical provider. After about a week, they send you and your doctor the results.

Then your doctor will prescribe auto-cpap therapy. Hopefully health insurance defers some of the cost, but in any case it shouldn't be ruinous for someone with an HSA. You can get a Phillips Dreamstation off Amazon for $620.

Please go get tested.


Or if your family has definitely seen apnea events, just get an apap off Craigslist and a new mask and give it a test run.

Edit- Sorry didn't see this exact comment below, so I concur


You can get a used CPAP from Second Wind:

https://www.secondwindcpap.com/

Or you can sell it if it doesn't help you.

If it's an auto-adjusting machine, then you don't need the sleep technician either. You can just start at a lower pressure and look at your data and then see if you need more.


(I am not a doctor, etc.)

If you are a bit adventurous, go on Craigslist and buy a used one with a new mask for like $100. You probably are a Large mask size.

Figure out how to adjust it and try it for a few days. Keep a written record of how you feel. See if it helps. Starting at 6 of whatever the unit is will probably be a good starting point.


I did this - after finding out what a sleep study and a new machine would cost, I just picked up a set from Craigslist, and the difference is like night and day. Described the symptoms to a psychologist and was basically told that yeah, it’s sleep apnea, but they can’t write the prescription until the study is done.

The only annoying bit is replacing the masks and headgear - they’re considered prescription medical devices, so you have to exploit a loophole in that they are only covered under the RX requirement when purchased as a set. So, I have to buy a mask on one order, and the headgear on another.

It’s a pain in the ass and I’m more than a little bit peeved that I have to beg for permission for this quality of life improvement.


Huh? I went several years where my insurance didn't properly cover masks / headgear / tubes etc, and I just purchased them off Amazon without any difficulty.


You also had a prescription for those right? That's what I was referring to. If you get ahold of a machine without a doctor's permission slip, buying supplies is a bit more challenging.

Amazon won't sell you full mask sets, you have to buy the frame/cushion/headgear/tubing separately and put it together yourself. Usully at a very inflated markup.. recently had to pay $100 for a replacement frame after one of the headgear hooks snapped off of my F10.

Other CPAP companies online won't even talk to you without a prescription on file.


You can die from this (apnea) if you are not careful. Getting a cpap properly set and a mask that works for you will be a life changing event in terms of quality of sleep and your general well being. How much is that worth to you?


> All of this is why my first step right now is to keep losing weight

Weight gain is a symptom of untreated sleep apnea, so you should consider whether you're doing this in the right order.


I got an auto-adjusting machine which was set to a fixed pressure by the medical provider. I had a difficult time tolerating it. I had to do a little research to figure out how to use the settings at which point, I made the machine auto-adjusting. It was a great deal more tolerable after that.


How much was that machine? Do you need the sleep study in the first place? How much do you spend on wants like Netflix?

The market can solve many of these. I've looked at CPAP machines. I've spent more on a guitar. You don't need your insurer or the government to clear your purchase of such a machine.

It's like ordering pet meds in the US. I know what flea med to purchase. I don't need a vet prescription. Sites I've visited in the US say I do, so I buy from Canada. Cat's are not dead.


EU GDPR rights give you the right to

1 obtain access to the personal data held about you; 2.receive your personal data in a machine-readable format and send it to another controller (‘data portability’);

https://en.wikipedia.org/wiki/Data_portability

"Nevertheless, circumstances may exist when such a reproduction of the code and translation of its form are indispensable to obtain the necessary information to achieve the interoperability of an independently created program with other programs. "


> “If things go wrong, they may end up dead in their bed."

They make it sound kind of risky, but ... does anyone have a way to quantify the risks here?

I mean, is adjusting your own CPAP machine as dangerous as say, driving a car across country, or drowning on a trip to the beach, etc?


From what I've read, if you raise slowly (like 1cmh2o per day maximum) you'll notice an increase in Central events and a higher AHI or obvious aerophagia if you get too high. I haven't read a single case of exploding lung though even at 20cmh2o. This is not medical advice though!


Ear damage may occur. Death though? I'm skeptical.


Under the GDPR, isn't this data owned by the patient?


In the past, the CPAP machines my wife and I used needed to be programmed in various ways, and they had separate data cards as described. The ones we got a couple of months ago are completely dynamic, they aren't pre-configured in any meaningful way.

Also, they send their collected data up to 'the cloud' over a cellular network, where we can view the data, in some detail, with our web browser, as authenticated by a code printed on each machine.

Seems like a good way to go.


I keep my CPAP in airplane mode because I have no idea how they protect the data or the protocols used to adjust the settings remotely. Based on what I know about every other IoT device, the manufacturer almost certainly knows nothing about computer security.

This annoys my doctor because it means she has to read the SD card rather than pulling my data out of the air, but I explained to her that I knew as much about computer security as she did about respiratory medicine, and if she knew what I knew she'd be horrified.


Agreed. I have a ResMed that uploads the data daily over the cell network and then can view the data in a smartphone app. Like the article mentions it's not terribly detailed but it does show me data like my AHI, and how it has dropped dramatically since using the device.

Good enough for me.


Somewhat related:

I had major surgery for sleep apnea a few years ago. It was completely worth it. I don't sleep with a CPAP any more.

I do wish I could get a very light CPAP without a prescription for when I have congestion from allergies or a very bad cold. When I had my CPAP, it used to power through the congestion so well that I sometimes strapped it on in the middle of the day just to relieve cold symptoms.


While we're on the subject of CPAP: is anything known about the consequences of long term usage? Won't the constant positive pressure eventually result in reduced muscle tone around the airways, or maybe weakening of the diaphragm or something?


While this thread is on the front page, I wanted to chime and say I had a good experience with the folks at https://www.rpmhst.com

They do home sleep testing and will write a prescription for a PAP machine. The discount of buying one through them is also pretty good. I got a ResMed AirSense 10 and it's been very helpful and I'm grateful that I didn't have to go through an in-clinic sleep test and could just pay for this out of pocket with a fixed price. Not associated with them, just a fan. I found them through the r/SleepApnea subreddit which is a good place to discuss this sort of thing.


Why is it so hard for people to write posts like this without all the bias. Saying things like, “Everybody is trying to get you in and out the door, and take some profit from your pocket.” and "He agreed that most sleep apnea patients around the world are underserved: “Doctors don’t listen and don’t have time anywhere in the world.”" just makes the whole thing feel like a snake oil salesman at work.

Saying it without the snide remarks is a much more powerful message, to me.


Would these efforts even exist if patients didn’t feel frustrated at the establishment professionals?


In my experience, sleep apnea treatment in the US is a racket. The sleep center tried to maximize the number of office visits they could bill before prescribing treatment and the insurance tried to delay approvals and minimize the cost and quality of equipment they would provide. Meanwhile, patient suffers. After 5 months of repeated visits, when another 6 weeks was tacked on, I went out on my own and got the best machine.


You want them to present a solution to a problem without implying that the problem exists? That seems like an unrealistic thing to ask for.


"take some profit from your pocket" is needlessly severe, but the sentiment that doctors are juggling too many patients resonates with me. "Doctors don't have time anywhere in the world" probably isn't accurate, but my doctor certainly never had enough time to listen to me, which caused me years of needless pain because of a simple misdiagnosis.

I was frustrated enough with engaging with medical professionals that I instead just adopted a healthier lifestyle. My last regular checkup was in '09, and I next visited a doctor in 2013 when I pulled a muscle in my chest, and wanted to make sure I wasn't having a heart attack.

Obviously my anecdote isn't proof that this is a systematic problem, but the fact that I see comments like this "in the wild" at least triggers my confirmation bias :)


It's free, open source software. I really don't think they're trying to sell you anything.


One way around this is to get a bed that has something like a zero gravity mode. Sleep a bit upright and your airway won't collapse in on itself.

I don't need CPAPS yet, but if a CPAP alone isn't working for you, you can try this combined with CPAP or just using the bed itself.


And at the risk of being down voted, weight loss: https://www.health.harvard.edu/blog/weight-loss-breathing-de...


The risk of sleep apnea increases with age, as well as the morphology (small neck, ...) or neurological problem: https://www.atsjournals.org/doi/full/10.1513/pats.200709-155...

Obesity sleep apnea ≠ Age and morphology sleep apnea, the first can be cured by weight loss, the second is a lifelong "disease" (except surgery that does not last).


In my case, my OSA is most likely due to being overweight.

Having effective CPAP treatment alongside active weight loss measures would work wonders. It's no fun trying to diet and exercise while being completely exhausted day in and day out due to poor sleep.


Worse, the constant exhaustion makes your mental state absolutely horrible. Not just in the obvious stuff like being more scatterbrained, but in lack of motivation and, I dare say, depression.

Wouldn’t wish it on my worst enemy.


Yep, I most likely had it for 5 years without realising it. I had no idea why I was so tired.

Every day, getting to work on time was a huge mission, slogging through the day trying to get stuff done jacked up of caffeine.

Then the nights, despite being exhausted I was unable to fall asleep, my experience was that I was lying awake in bed for hours but actually I was falling asleep many times per minute and choking myself back awake. The only easy way to get to sleep was to have a few drinks which naturally made my apnea worse, not to mention the negative effects of alcohol.

Once I realised I was doing it, I learned to sense when I had choked back awake. I did everything I could to get a CPAP Machine ASAP (it was expensive and not covered by health insurance in Australia).

2 weeks of using it every night I felt like a new person. My compliance using the device is nearly 100% over the last year (as reported by the device) and it's been so great.

I fall asleep in about 5 minutes these days.

The reason why I didn't realise I had this condition was because I had been single for about 6 years and slept on my own. It wasn't until I started dating that my (now fiancee) said 'you snore and choke all night'.

So, as a PSA, anyone overweight and long time single that is always tired, get a sleep study!


There is a secondary solution to CPAP machines that may apply to some people who find their breathing/sleep improves with sleeping position. About a year ago I got a Mandibular Advancement Device from a TMJ specialist that pushes the jaw forward, preventing the tongue from pushing the against the palate and obstructing airflow.

I had tried a CPAP machine previously and still felt that it wasn't working (although the data said otherwise, I just felt like I wasn't breathing properly).

If, while laying on your back, moving your jaw forward improves breathing significantly, this type of treatment might be a good alternative to a CPAP (costs are similar though).


Another solution is a pluggable hole in your neck. Remove plug when sleeping.


My understanding is that sleeping on one's side (rather than back) can make a big difference too.


Is there any cheap way to get a CPAP evaluation and device? I’m in startup grind mode and just don’t have the extra funds right now but I’m curious if this is why I feel lethargic all the time.


It's pretty hard to do a startup with sleep apnea (I know from personal experience). Take care of your health first.


What other device hacking subcultures exist for medical devices?


There is OpenAPS, the Open Artificial Pancreas. They are connecting commercially available insulin pumps and glucose monitors with open source software to auto regulate blood sugar in folks with diabetes. https://openaps.org.

There are also folks making implants, LED lights and rfid tags and such. https://en.m.wikipedia.org/wiki/Grindhouse_Wetware


Diabetes! The first marriage of a continuous glucose monitor to an insulin pump was by an open source community called Nightscout.


Open Artificial Pancreas System (OpenAPS) for Type 1 Diabetes.

https://openaps.org/


First one I heard about was using sound amplifiers for hunting instead of hearing aids from an audiologist.


Lots in diabetes care.


A couple of signs of sleep apnea: grinding teeth and not dreaming. I couldn’t tolerate cpap. sleeping on my tummy or atleast on my side helped a lot.


This is the first time I've heard of the "Librarian of Congress" weighing in on DRM. Is this a normal thing that I've somehow missed?


Yes. As the article says, copyright law has a provision whereby the Librarian of Congress can create exemptions.

Pretty smart actually, Congress not trying to enumerate all small details itself.

(section 1201(a)(1) of title 17, USC)


I believe these were introduced under the DMCA in '98?



For some values of "normal," yes.


These guys deserve social recognition.


Why do people need CPAP machines, why can't you simply sleep on your side? Most primates instinctively know how to sleep in the best positions (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1119282/) humans insist on sleeping on their backs which other primates instinctively know is dangerous.


> Why do people need CPAP machines, why can't you simply sleep on your side?

Because they have issues which require CPAP machines.

If I sleep on my side, the apnea situation improves slightly, but it does not go away at all. Do you think that people would prefer to deal with a bulky and unconfortable machine, as well as doctor appointments, if they could simply sleep on their sides?


I think CPAP users are getting scammed, just sleep on your side, all primates instinctively know to do that. Humans are the only primate that insists on sleeping on their back. Obviously if you throw up will asleep on your back you will die. 100% of people who go to a CPAP clinic get diagnosed with sleep apnea, just statistically this is obviously a scam.

These sleep clinics make money off you if they can diagnose you with a disorder that requires you to purchase a $2000 machine to "keep you alive". Of course, everyone who walks through the door needs what they have to sell.


Plenty of side sleepers have sleep apnoea or snore.


That actually something I find interesting. I kind of assumed you were supposed to sleep on the back and felt bad about just not being able to. It's just so uncomfortable. Makes me happy to know there isn't anything wrong with me? I hope!


I think the risk of death is probably overstated, as these people have often gone decades without a CPAP, and lived just fine.


Just to be clear, sleep apnea causes organ damage. I had oxygen levels dipping to 71% in my sleep study. It was enough to dramatically affect my cognitive abilities and took months of CPAP therapy to recover from. I'm 43, relatively fit, and don't have a history of snoring. If you have excessive daytime sleepiness, confusion, and difficulty thinking, get checked ASAP. Fortunately you can reverse the damage:

https://aasm.org/brain-damage-caused-by-severe-sleep-apnea-i...

Sleep apnea is not a joke. My dad has a pacemaker because of the stress placed on his heart from years of untreated apnea.


> If you have excessive daytime sleepiness, confusion, and difficulty thinking

Ive always wondered and never found data: do you have an idea of how many people with these symptoms get prescribed mental disorder medicines from not knowing the real root cause? I can picture this stuff being misdiagnosed pretty hard by some practitioners.


I don't know what the statistics are, but they definitely tried this with me. Aside from the usual sleepiness and confusion, sleep apnea can also cause anxiety. (No wonder, you're basically running on cortisol by the time it gets bad enough to notice.)

I don't fit the standard profile for someone with sleep apnea, so they pushed anxiety meds pretty hard on me. Had to insist on a sleep apnea test.


Yeah, that's what Im scared of.

I personally have a lot of the symptoms. I have extremely low attention span, awful memory, I wake up 5 times a night, weird dreams, can't focus at work, can't keep track of anything for more than a few minutes...

Talking to my doctor and going through my health history, he immediately ruled out sleep apnea and started suspecting ADHD and such. While it definitely could be that, for the first half of my life I was the opposite... extremely focused, top of my class, photographic long term memory, you name it. I need to convince someone to let me do a sleep study


That sounds a LOT like sleep apnea. I'm not sure how your doctor could _possibly_ rule it out without a sleep study (it's pretty much impossible -- he would have to confirm any potential normalcy by watching you sleep and breathe).


Good question. I think the sea change will come when there are cheap and widely available sleep monitors which include continuous pulse oximetry. We're close, but not quite there yet.


That's not entirely true. If you mess up you can end up rebreathing your own air in the tube.

It has small holes that are supposed to allow fresh air to mix in even if the machine is not providing any. But they are small.

If you are a normal sleeper you would normally wake up and remove the mask if you feel suffocated. (For example a power outage.)

If you are with someone who uses such a machine you can test it - unplug the machine, and see how long it takes them to do something (wake up, or remove the mask in their sleep).


I've slept long into a power outage and woken up with a headache and significant disorientation and my mask still on. Really upsetting.

And with an AHI off the charts, I may very well die without one.


Might be worth investing in an Uninterruptible Power Supply for it if you haven't already.


If you get a UPS, make sure you test it at least once per month or so.

I discovered that my 2 year old UPS failed when the power went out and I got a mere 3 seconds of power to my computer. If it had been being used for what is effectively life support, I'd be dead.


Such an obvious answer that eluded me for some reason... Thanks for the suggestion.


This is a good idea, also many machines have batteries you can charge.

That said I should get a UPS for my machine, I literally cannot sleep without it!


As a bonus, these usually beep loudly when power to them is interrupted.


And/or a power failure alarm.


There are CPAP batteries.


> It has small holes that are supposed to allow fresh air to mix in even if the machine is not providing any. But they are small.

Oh for god's sake.

You are not going to die if the machine switches off, even with a full face mask. It is not hermetically sealed.

If you don't use a full face mask, but instead a nasal mask or pillows, this is what you'll do: you'll open your mouth and start breathing that way. Simple.


In my experience, if the power goes out you wake up immediately due to the change in respiratory effort, way, way before you'd suffocate. Even if you could, which would be hard given that you can breathe through the mask when the machine is off.


Also, many masks are nose only for those who sleep with their mouth closed (or learn to.)


> unplug the machine,

The only machine I've had experience with (a parent) had an alarm for power loss. Is that somehow not standard/a requirement?

Edit: As I think about it, there was an associated oxygen machine, and that was the device with an alarm for power loss. Nevertheless, it seems like an audible alarm on a CPAP would be a really good idea.


Nope. My machine is plugged in where my bed hits the wall, every now and then the bed moves a little in the night and unplugs the machine and I wake up because I am having trouble breathing. But my guess is that this is only a serious hazard for people with very serious health problem, or the elderly. If you are one of those, don't F around.


Edited my original, it was probably that way on the one I mentioned too.

I am a little surprised to find that CPAP use is considered non-serious though. (Being halfway to a BiPAP? Holy moly.)


High RDIs/AHIs are directly linked to orders of magnitude higher risk of heart attack (and I think also strokes).

Epidemiologically speaking, sleep apnea is deadly, if untreated.


I have an AHI of 79. Sleeping without a CPAP is like rolling the dice on death.

It's also something I can't change through diet. I'm a very in shape individual. My anatomy just isn't right.


I'd say 'lived fine' is probably not accurate. OSA is under diagnosed and one unfortunate outcome of OSA is high blood pressure, and that left untreated can cause and early death.

Not to mention the loss of productivity due to not getting healthy sleep.


Maybe a badly configured CPAP machine is worse than nothing at all?

The article says the data they collect include something called "mask leak rates". That means the machine has an airtight mask and could in principle suffocate you if it malfunctions.


That means the machine has an airtight mask and could in principle suffocate you if it malfunctions.

Ummm... no. If the CPAP machine fails, you'll just start sucking air in the holes that are normally used to expel your exhalations. (When you exhale, the air goes out through these vents, not back into the machine.)

It's significantly less airflow, and will cause you to wake up, but it's not going to suffocate you.


But isn't the point of sleep apnea that the lack of air does not wake you up?


Only until your brain reaches a threshold where it says "OOOOK, we definitely need to start breathing now. Time to wake up". When you reach that threshold, you wake up on a very low, subconscious level that disrupts your sleep pattern, which in combination with the lower level of oxygen, is what causes the damage to your system.

The difference with a malfunctioning machine is that you still cant get air even after that threshold has been hit (or at least it's very difficult to do so). At that point, your brain kicks you totally out of a sleep state and you awake completely.


No, the point is that your brain initiates an "emergency procedure", so to speak, when oxygen levels in the blood get too low. This results in a few very quick, gasping breaths and lots and lots of physiological stress, including heightened blood pressure.

If lack of air not making you wake up was the problem, patients would die long before seeing a doctor.


That means the machine has an airtight mask and could in principle suffocate you if it malfunctions.

One of the most popular masks is the ResMed Airfit P10.[1] This is a "nasal pillows mask". It is airtight, but only on your nose.

If the mask malfunctions or your nose clogs up, then instead of suffocating, you can open your mouth to breathe.

A full-face mask can presumably malfunction, even though it has a "failsafe" feature to let you breathe.

[1] https://www.resmed.com/us/en/consumer/products/masks/airfit-...


Peter Farrell (ResMed founder) has an oft-repeated quote to the effect of “The only way a CPAP machine can harm you is if someone hits you over the head with it.”


I'd be surprised. You can breathe fine even with the machine powered off. Power failures would be pretty exciting if not.


They are airtight in as much as they can effectively deliver the prescribed pressure without leaking air. Not truly airtight. The system HAS to have a safeguard against malfunctions, as power loss is always a possibility. They generally have a passive airflow built into the line somewhere.


Not sure what exactly "mask leak rate" means, but I know you want the device to form an airtight seal with your face so it's not blowing out the sides of the mask. The mask as a whole has small ventilation holes, however.


That would be a terrible device design regardless of if the approved software is being used on it or not. I suspect it's not nearly that risky.


My wife (oral surgeon) says the only real solution to sleep apnea is surgery. CPAP machines to her and bunk. I believe she moves the jaw forward to help open up the airway.

Whatever works I guess.


Sounds like your wife isn't well read on the topic.

CPAP is life saving treatment for some. Sleep apnea surgeries have poor success rates https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480570/


"oral surgeon"


Doctors specialize for a reason.


"poster on HN"


If you ask a surgeon if your problem should be solved by a surgery in their specialty, you are more likely to get a "yes" than you should. There is definitely a confirmation bias there, tending to see patients for which surgery is necessary instead of a fair sample of those afflicted.


I've witnessed this first hand. After having a sleep study and finding that I have mild OSA my ENT suggested removing my tonsils, uvula, and part of my palate to open up my airway. I told him that sounded like the nuclear option and he seemed somewhat surprised by that conclusion.

He also suggested palate coblation, which seemed more reasonable. I chose to forgo both of those procedures and eventually ended up with a mandibular advancement device from a TMJ specialist, which has made a huge difference.


The problem is that breaking your jaw and moving it forward has its own risks--especially in patients 50+ years of age.

Nerve damage occurs in the vast majority of cases. The older you are, the worse the recovery from that seems to be.

CPAP machines may not work for everybody, but there is a significant set of people for whom they clearly do.


Surgery might work for obstructive sleep apnea, depending on the actual cause, but it will not work at all for people like me who suffer from central sleep apnea. With central sleep apnea the windpipe isn't obstructed, your autonomic-nervous-system just doesn't breathe sometimes.

https://en.wikipedia.org/wiki/Central_sleep_apnea


They are very much not bunk.

They don't work for everyone.

For people (like me) that they work for, the benefit is large, and immediately obvious.


I'm going through this now, luckily without the surgery. I was self-diagnosing on webmd and thought I had fibromyalgia! After much research, and a sleep study, I found myself in the situation your wife describes.

My narrow palate is due to sucking my thumb until I was 9 due to some mental trauma from home fires and moving a lot when I was a kid, changing schools etc. I had braces/headgear until I was 17 and was left with a jaw set too far back. 20 years of growth hormone from working out caused my jaw to grow back into my throat and narrow my airway.

After being dismissed this year by 2 orthodontists who also said I needed orthognathic (jaw) surgery, I began researching on my own and stumbled onto orthotropics and the A.L.F. appliance:

https://www.google.com/search?q=orthotropics&tbm=vid

https://www.google.com/search?q=alf+appliance&tbm=vid

Luckily I found a dentist locally who specializes in this. As an adult, it takes several times longer to move teeth and expand your upper jaw, but it is possible. I'm about 3 months into a 9-18 month treatment and have felt immediate relief. With breathe right strips, I'm back to feeling awake and happy again (I don't know if the strips are as safe as CPAP, especially over the long term though).

I'm also starting myofunctional and osteopathic therapy. It turns out that many problems in the body with posture and breathing start with the teeth/jaw/tongue. Computer geeks are at terribly high risk of these problems due to our sedentary lifestyle. I think Gen X finally reached middle age and is hitting long-predicted health issues like these.

Hope this helps someone.


You don't need surgery to move the jaw forward in order to treat obstructive sleep apnea.

Some dentists (like mine) offer a removable orthotic [0] that you wear during sleep which accomplishes the required jaw movement and improves sleep quality. It's an alternative to treatment with CPAP that doesn't require anything invasive like surgery.

I haven't undergone this particular treatment myself, but I know from wearing other styles of precisely designed orthotics (both removable and semi-permanent) that they can improve the quality of your breathing, and thus improve the quality of your sleep.

[0]: https://somnomed.com/en/


If all you have is a hammer... CPAP machines are the standard treatment, because they are cheap (compared to most other treatments for chronic diseases) and fully effective for most (but not all) patients.

There are few treatments with better cost/effect ratios.


My fiancee is a sleep specialist nurse practitioner and would say the opposite, that most people don't need surgery and a majority of sleep apnea can be resolved with a CPAP.


Also, the barber says you need a haircut.


Moving the jaw forward is highly invasive surgery that is hard to recover from. Another surgery, the "UPPP" is also very invasive and has a much lower success rate than CPAP.

CPAP is by far the best solution for most obstructive sleep apnea patients.


> My wife (oral surgeon) says the only real solution to sleep apnea is surgery. CPAP machines to her and bunk

And this is why she is an oral surgeon and not a sleep specialist.


Doesn't weight loss help many patients improve?


For those that are overweight yes, but not everyone that has sleep apnea is overweight (like me). The apneas are caused by different things in different people and I believe any surgical solution would likewise depend on the person.


It usually helps, but as with most obesity-linked conditions it's not suitable on its own as a first-line treatment. The effect is small compared to CPAP, and sufficient weight loss to see that effect takes months, whereas CPAP starts working literally overnight (DME/insurance shenanigans notwithstanding).

Also, chronic sleep disruption is associated with a cluster of symptoms (impaired insulin sensitivity, lethargy, increased hunger) that make it very difficult to lose weight in a normal/healthy way. Many patients find that they lose 10-20 pounds after starting CPAP with no conscious change in their lifestyle.


OSA can be caused by many factors. Weight is only one. I'm skinny and I'd be dead without CPAP.


Generally yes, because the throat is less constricted when you're not overweight.




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